J a k e

J a k e
at the beach in Destin

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine


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Monday, June 21, 2010

summer blues

I used to love summer.
the sun, lounging in the pool, long days, and pretty flowers.

lately, though, summer is just a big ball of stress.

A couple of Jake's major seizure triggers are heat and lack of sleep.

so in trying to prevent seizures, We try very hard for him to get enough rest and stay cool.

It kind of seems unfair to me, as summer vacation is a kids dream.  Jake and Addison would like nothing more than to swim all day long, come in to eat dinner and then swim some more.

As much as I, a sun worshipper, would love to adhere to this schedule, it has proven to be awful for Jake.  While we try to set limits for Jake, Addison is also effected.

Looking for things to keep them busy on these long summer days in the Texas heat, has proven to be quite a challenge.

Jake has been slowly recovering and regaining seizure freedom from the mistake of missed meds two weeks ago.

However, yesterday we tested the limits for Father's Day.

The kids swam all morning with my dad.   They came in for lunch and a short nap and then hit the pool again with Matt for several more hours.

We put Jake to bed fairly early, as we recognized the business of his day.  However, within 30 minutes of him falling into a slumber he had 2 tc's.

Uggghhh, it is so difficult to balance what the kids needs and wants are.

On top of brainstorming ways to keep the twerps busy, I have found myself dealing with a 101-102 fever the past couple days.  I am sure this doesn't make their days any more fun, as all I have wanted to do is feed the baby and then rest on the couch.

I have happened to find an awesome snow cone shack that certainly helps to cool us off on these hot days, and even found shrinky dinks to help occupy their time in an air conditioned atmosphere. 

But lets face it, as fun as these new adventures may be, they only last a short time and are certainly not as fun as wasting away the long days of summer outside.

Fathers day
(Jake is barking like a seal)


The kids present to Matt...it was framed in a horizontal, 3 window, black frame.








and finally, this is how the kiddos wrapped up the day.  Addison rocking and reading to her little brother.


 
Then followed that beautiful season... Summer....

Filled was the air with a dreamy and magical light; and the landscape
Lay as if new created in all the freshness of childhood.
-- Henry Wadsworth Longfellow

2 comments:

Leslie said...

Sorry about being sick and stuck in the house. I think we'll be in town this weekend..maybe we can help entertain the kids. Love the "professional" pics!!!

Julie said...

Love ur kids!!!!